A Poem from Sabina

I may not talk, walk or crawl,

I may not be able to stand 3 feet tall.

I was born with a disease that has no cure,

Yet I am special in God’s sight, that’s for sure.

Because of my sickness, I have seizures everyday,

I am turning 3 but unable to go out and play.

The things that other babies and kids do I cannot,

I have several disabilities, yes lots of those I’ve got.

My mito disease is a progressive one,

Certain things I was able to do before have now come undone.

But that’s ok because I know,

The wonderful love of Jesus before me goes.

My family surely love me and provide the utmost care.

I dwell and live on their kisses and hugs like teddy bears.

I enjoy being cuddled just like any other baby.

I thrive on the sense of loving touch that mommy gives me daily.

I enjoy watching Disney Junior and having books read to me,

I enjoy splashing in the pool with Sophia and daddy.

Three times a week, I see my Teacher Jing.

Even though it’s hard, my therapy is everything.

My food is always mixed with vitamins and meds galore.

Yet I get a treat once in awhile with my favorite ice cream and more.

I may be different, I may not smile as much.

I may not respond to laughter and such.

But please don’t think I don’t understand or feel,

I am a person too and can cry sometimes still.

A person with a disease needs lots of care and love.

Not charity or pity but real love from above.

Special kids are people just the same,

We live in your world too, but just belong to a different ballgame.

So when you see me, please don’t just glance.

I may be having a good day, and show you my bright smile by chance.

When you look at me, I may not giggle or hold out my arms,

But deep inside me, I know God’s blessed me with a special charm.

But please don’t be sorry too for how I am today.

Just treat me like you would any other toddler that’s all I can say.

God has a higher purpose for me this I know.

His mercy and grace sustain my life as I grow.

When one day in heaven with Jesus, my family and friends I’ll be.

I’ll be able to walk, talk and finally say -- 

"Despite my disease, thank you all for being so loving and kind to me."

Hugs

A little over a month ago in a birthday dinner, I met the wife of one of the guys in our village tennis club. As I said my goodbyes that night, this sweet lady gets up, tells me it was nice meeting me and then wraps her arms around me to give me a really big hug. As I left the party, I realized how nice it was to get a hug. And her hug I felt, had so much warmth and love despite only meeting that evening. As i prepared for bed that night, it got me thinking that -- 1) A hug can instantly brighten your day 2) A hug speaks a thousand words 3) Hugs are not given as much as they should.

Filipinos in general i think are not huggers. We aren't touchy people. Filipinos brush cheeks with each other when they greet and hugs are not part of our culture. When I was living in the States in my pre-teen years tho, everyone in school hugged each other. It was a way to say hello and express friendship. In my mother's side of the family, (who all live and grew up in the states) we all give each other a big hug when we see each other. In fact, hugging cousins and aunts and uncles were something my husband had to get used to in our family.
    
In good faith, hugs mean hello, nice to see you, thank you, see you soon etc..  In the lonely and sad times tho, a hug can mean so much more. It can say a whole lot more than words can express. It says I love you, I am here for you, I feel you, I am praying for you, I understand, I care about you, and I may not have the words to express what's in my heart, but know that I am thinking of you and beside you in your struggle.

In our dark, confusing and sad moments with Sabina, the times I felt great encouragement were when friends and family just gave a big hug, an arm over my shoulder and held my hand. No words needed to be said, but were all spoken through a simple touch. Sometimes, for us moms in our own special situations, a hug is all we need to get us going, and nothing more.

Thank you Lord for the gift of hugs and the friends and family who have given them along the way. :)

Isaiah 40:11a "He tends his flock like a shepherd; He gathers the lambs in his arms and carries them close to His heart."

Father's Day

Father's Day happened a week right after my grandmother passed away; and with the other tragic deaths that also occurred during the same time, I didn't get to write about the one father in our lives who is to be truly, truly appreciated and acknowledged for all the effort and love he puts in to being one great father. This person is none other than Sabina's daddy.

Sad to say, I know of quite a number of dad's who have never changed a nappy; or never wiped poop from their child's butt; never fed their 10month old who splattered food all over the floor; or have never given their child a bath; or have stayed up for 3 o'clock feedings and colicky babies. For all intensive purposes, these dads prefer to do the "fun" stuff with their kids and have left the "dirty" and exhausting work to the mothers or yayas.

Not so with Sabina's daddy. Sabina's dad has not only done all of the above with both my girls (plus more); he has happily volunteered to do them many times even when I have not asked. He is certainly a wonderful dad to my daughters and is extremely hands on with both of them. There is nothing he wouldn't do for his two princesses.

In Sabina's case especially, both parents need to work together to be one good, solid team. We need teamwork to be able to adjust and manage her many needs. I cannot do everything on my own; and in our situation, I can always count on Sabina's dad to be able to be a great partner and teammate. In Sabina's first year and a half, it was his job to give her daily bath. And he did not do it grudgingly. That was his one way of bonding with Sabina. Many times, he would give her late night bottle of milk with her meds; and to this day, when I am too exhausted to get up when Sabina needs the extra comfort she needs from seizures or an illness, he will carry and rock Sabina to sleep in the wee hours of the morning without complaint.

Sabina's dad will never refuse to change her diaper with poop, suck the mucus from her nose, or stay up with me if I asked. He helps me keep track of medicines, and vaccinations, and takes the initiative to remember what routine tests Sabina needs to do next. He is one SUPER dad! I sure hope that Sabina and our eldest daughter know how blessed they are to have him. :)

Belated happy father's day to the best dad the two girls could ever have!!

 

 

   

 

Something More.......

Sharing what a fellow mito mom recently shared in our mito group.... 
This is dedicated to all the special moms out there who do wonders for their special children.                God bless you all more and more...... 

SOME MOTHERS GET BABIES WITH SOMETHING MORE… My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more.

Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder. AUTHOR UNKNOWN